I am writing…

from a sick bed. I have an horrendous cold. i am fevery, and sniffly, and all the not-so-great things that come with Being Ill.

I am surrounded by tissues, and empty tea cups, and Olbas oil is the fragrance of the day. It is far from exciting.

I just wanted to write a little something, though. You see, I’m awfully self-degrading. Sometimes I joke about it, but there is an element of truth to my self-berating insults. You see, I always feel I could do better. If only I could be better, be stronger, more intelligent, more compassionate. It takes a lot for me to sit back and realise that I am doing ok. So. I suppose whilst I’m ill, and already feeling sorry for myself, I’ll sit back and count my blessings.

This month I graduated. That’s right: I’m a Master of Research (whatever that is). I have a 120-page thesis and several publications and a lovely certificate to show for it. So, there’s that.

graduation

Here’s me, looking uncomfortable in my graduation attire.

I’ve also survived a year in the workplace (hooray!). And though I’m currently in the midst of job applications and other job-related things, I feel positive that I’d be an attribute to most workplaces. I really like working. It gives me purpose, and something to aim for. I just need someone to realise that and to take a chance on me!

I am having a great time with Ben, and my friends, and I have a lot to be thankful for. There’s obviously a reason these wonderful people are in my life, and I should recognise that more often. I just need to take stock of things and realise that, hey: I’m doing OK. I actually am.

Anyway. I’m off to get another tissue, and make another brew.

Maybe we all need to sit and take stock sometimes. I recommend it.

Heather x

Realisations

I feel like I’ve been having a mid-life crisis.

No, really.

I thought I’d had my life and career all mapped out: I’m graduating with my MRes (with distinction!) in July; going on to do my English PGCE in September, then I’ll teach. Sorted, right?

Wrong.

I’m not ashamed to say that I’ve well-and-truly changed my mind, at least for now. I’m not really sure if this was a gradual process, or a sudden ‘light-bulb’ moment, but I just know teaching is not the right thing for me at this time. Doesn’t mean it’ll never be. It’s just, right now, not what I want to be doing.

I’d be lying if I said my disabilities didn’t have an impact on this decision, because they absolutely, almost certainly did. I’ve had the unique experience of actually being able to teach before embarking upon teacher training; I have my own classes, mark registers, prepare resources and do all of the other usual ‘teachery’ things that teachers do (except marking…thank goodness). And this unique insight has perhaps shown me that though I may think I’m invincible, and though I do not like to admit that my cerebral palsy can cause issues, it’s a struggle. And, being truly honest with myself, I just think I’m not cut out for the teacher training, with all the rigmarole of planning and marking and studying simultaneously.

There. I said it. I’m not cut out for it at the moment.

know I’m a good teacher. I’ve had several observations from line managers that have been great. And I love teaching. It’s hugely rewarding seeing that ‘light bulb’ flick on; it’s intensely gratifying watching a student mould, change and develop into themselves. It’s a pleasure to watch their confidence increase; to share their successes, and to pick them up when they need a boost. But it’s also hard. Teaching is – in my experience – either really good, or really, really bad. There’s nothing more frustrating that children refusing to listen, or making fun of your lesson that you’ve spent hours planning. There’s been no in between. And at this stage of my life – where I’m eager to establish myself, and settle down – I just need to focus on what it is I really want to do right now.

I feel strangely liberated by this. I thought I’d be bricking it: I am a person who thrives on routine, after all. But it’s finally time for me to really think about what I want to do, and to go out there and do it. And, most importantly, I need to make sure I look after myself.

Sometimes it’s okay to not know what you’re doing right now. Sometimes it’s okay to have a realisation, and to act upon it. I am taking this time for me, and for my body, and for my mental health. I know there will be bumps along the way, but I am excited to see what happens.

 

Physios, pain and patience

Well hello, you. I know, I know. It’s been a while, hasn’t it?! I’d say I have a perfectly reasonable excuse, but all I can really say is that old little thing called ‘life’ got in the way. 
I know. Lame excuse. 
Anyhow, just thought I’d let you know about my most recent visit to the hospital. This is following on from my   MSK clinic post, which addressed plans for pain management. I was pretty disappointed;  my beloved acupuncture isn’t on offer where I am now,  and so we decided on a physio/mental health plan.

The appointment finally came around. Though my physio was super lovely, I just felt…well…really underwhelmed. To address the pain the approach seems to encompass a plan for exercise and keeping a record of how this affects pain and/or fatigue, but I am already really mobile considering. I walk a hell of a lot (that’s what not driving does for you), go swimming and gymming when possible,  and at least once a week, and keep active even on my ‘rest days’ as my boyfriend would tell you. I literally do not stop. I am always on the go. And whilst I know some people with pain and musculoskeletal conditions can’t be as active as I am, it just seemed to be an assumption that I don’t do anything,  and so need to increase my activity levels. I was given a few exercises to try and have given things a go, but all in all I just don’t feel like it’s been very helpful. I still have pain even after trying these things,  I still could sleep for days, and I’m still fed up of being told thay exercise is the cure-all even though I do exercise, and lo and behold, I still have cerebral palsy and severe kyphosis.

Sigh.

I am really grateful I got an appointment, and know I am privileged to do so. But I just can’t help thinking this approach is missing the point entirely. Maybe I’m still bitter about not having the acupuncture,  but I just don’t feel this is pain management.  Right now I miss Hull more than ever. 
So, that’s my little ranty update for you. I have a follow up appointment and will mention my concerns. As always, I’ll keep you updated. It’s been quiet on here I know, but thanks for sticking with me whilst I find my feet. I should be back to posting weekly very, very soon
Right, better get back to doing the washing…

Heather x

Disappointments, Direction and Decisions: Visiting the Musculoskeletal Clinic

Yesterday felt like a big, anxiety-inducing, sad-making day.

I woke up early knowing I had to attend my MSK Clinic appointment with butterflies in my tummy and a raspy dry throat. Perhaps it seems a little over dramatic to feel this way, but I’d be lying if I said I wasn’t anxious.

Truth is, I had been waiting for this appointment for months, having had to be re-referred to a different service in a different part of the country since moving back after my university studies. This appointment would determine what kind of support I’d be entitled to back in my hometown, and having got used to the routine and effectiveness of treatment back in my university town, I was extremely anxious at the prospect of having no support at all, which seems like an exaggeration, I know.

You see, it is very much a postcode lottery when accessing healthcare.

As much as I love the NHS, I must say there really is a huge difference with regards to provisions and accessibility depending on where you are in the country. It’s all a bit touch and go with certain services, as each have different approaches. Back in East Yorkshire I’d been lucky enough to receive frequent acupuncture treatment, excellent mental health treatment through several talking therapies, and access to a neuro consultant, occupational therapy and physio. Though I’d seen a physio and neurologist a long time ago back home, I hadn’t ever seen an occupational therapist despite having cerebral palsy. I also hadn’t had frequent acupuncture, or had monitoring of my curvature since the age of sixteen. It made me anxious to think all the fantastic progress I had made in Hull could possibly be stripped away just because the services and provisions aren’t available here.

All of this explained the butterflies and raspy throat, I guess.

As I suspected, things have changed. Much to my disappointment, they don’t offer acupuncture here. This was a little hard to swallow (and accounts for my exclamation of ‘oh no!’ in the consulting room) and though I was offered facet joint injections back in East Yorkshire, I was told I probably won’t be able to have them over here for a few years owing to my age. I might also have to consider a spinal fusion in the future (eek!) so they’d want to reduce steroid exposure to a minimum.

Again, fairly disappointing.

It’s not all bad, though. I will be discussed at their monthly review -‘they’ being made up of doctors, spinal consultants, neurologists, nurses and pain management specialists – and it is likely I’ll be able to access support to help with the mental struggles of the cerebral palsy and scheuermann’s, which is really quite exciting considering this aspect has never been discussed. I’ll also have specialist physio, with therapists who know the condition, and will be able to advise me accordingly, a change from the ‘I’ve never actually seen scheuermann’s in a person before!’ physio I’ve had previously. So, I’m feeling a bit mixed-up about this one. I am seriously gutted I can’t have acupuncture, and will be looking into private treatment options.

However, I am feeling a glimmer of hope, and really feel that the mental health focus will help. It is also lovely to know I am not alone, so a big thank you to Ben for coming with me to my appointment. This is a start, and I have at least some direction, and I’ll just have to hang tight and see what’s in store.

I’ll get there, I’m sure.

Sending warm bear hugs on this chilly day…

Heather x

Social Media, ‘Spoonies’ and Speaking Out

Social media changed my life.

This is no exaggeration. There’s no other way to put it. Social media changed my life.

Most of us are well-acquainted with social media and all its forms. Many of us have a Facebook account, where according to the statistics provided by Facebook itself, there are 1.65 billion monthly users with an active Facebook profile (Facebook Newsroom, 2016). Twitter, though smaller, also has impressive user figures, with an average of 310 million active monthly users, and 1 billion unique visits monthly to sites with embedded Tweets (Twitter Company site, 2016). These figures pertaining to social media users are impressive, and are only set to grow as the number and variety of social media platforms increases. I know Facebook and Twitter often draw bad press with regards to ‘trolling’ or cyber-bullying incidents, but I want to share with you my positive experiences using social media, and why I think they really can be a force for good.

I got into Twitter when one of my friends set up my first ever twitter account. I was reluctant initially, but decided I had nothing to lose and so got stuck right in. Twitter seems to polarise its users: most people I know either love it or hate it, but after nearly six years of using that initial account, I can assure you I fall into the former camp, rather than the latter. Twitter – if you don’t already know – is described as a way to connect to others via ‘announcements’ of no more than 140 characters, called tweets, which can also include photos or short video clips. Registered users can create AND read tweets, whereas unregistered users can only read tweets and not create their own, or ‘like’, ‘retweet’ or send direct messages to others on the platform. Tweets are short, snappy and to the point, unlike Facebook statuses, which can be pretty long and lengthy in comparison. Facebook in comparison is great for reconnecting with long-lost friends and family members worldwide, and can be a fabulous place to store all your treasured photos. I also love using the Facebook messenger app, and I am part of several groups where we chat and connect over common interests. Both platforms provide a slightly different social media experience, and though some people have experienced the downside of social media, it has been such an incredible eye opener for me.

Social media is a great tool for connecting communities, and one I’ve become really involved with is the ‘spoonie’ community. ‘Spoonie’ is a term coined by Christine Miserando, based on the Spoon Theory, which you can read about here: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ . The spoon theory is a way to help explain the daily difficulties living with chronic illness, invisible illness and disabilities, and when I first stumbled upon this term everything started to fall into place. You see, I have cerebral palsy, but for a long time I didn’t want to admit to it. I didn’t understand it, and I felt ashamed and embarrassed of these differences. It was only through looking into the spoon theory and the community of ‘spoonies’ that connect as a result of this that I finally found the courage to come to terms with my diagnosis. I found like-minded people through the #spoonie hashtag, I got to learn more about my condition of spastic hemiparesis and its associated diagnoses, and after years of lack of education about my disabilities, things finally began to fall into place. My ‘spoonie’ experience culminated in meeting up with several of my wonderful twitter friends with hemiplegic cerebral palsy themselves, and I finally felt like I wasn’t alone. There were people who cared about my welfare. There were people who understood my frustration and felt my pain. And I just knew I’d made connections that would last my lifetime.

I feel that some people worry about speaking out and being honest on social media for fear of ridicule. I actually expected to receive a level of scrutiny when it comes to disclosing diagnoses and potentially sensitive information, and almost prepared myself for it. Though I was initially okay with sharing information about my physical disabilities – notably cerebral palsy and scheuermann’s kyphosis – I wasn’t always so sure about disclosing my mental health issues. But there came that ‘lightbulb moment’ when I found that sharing this information wasn’t so bad after all. There was a similar community here; where people with mental health conditions felt connected, understood and that they were being taken seriously by their peers. And then I thought ‘why should I be hiding this aspect of myself? Why should I feel ashamed about conditions I have no control over?’ and I decided to speak up. I decided to be honest; not only with others, but with myself. Being transparent about issues I’d sat on and ruminated over for year felt incredibly refreshing, and genuinely cathartic. I finally felt like I was coming to terms with all my diagnoses, and I’d be lying if I said social media wasn’t integral to that.

In an age where disabled people – and disabled women – are finding themselves under ever-increasing scrutiny, it is my firm belief that we must speak up. Though there have been advancements made with regards to liberatory and emancipatory movements during the twentieth and twenty first centuries, we have a long, long way to go. I myself have been the target of ‘ableist’ abuse, further perpetuated by damaging stereotypes seen splashed across tabloids and inflammatory articles online. We have not reached a stage where disabled people can feel comfortable despite their diversity. Many people are accused of fraudulently claiming benefits, or exaggerating the nature of their conditions for apparent personal gain. It is a constant uphill battle for disabled people to thrive in such restrictive environments, but portraying an authentic experience of what it is to be disabled in twenty-first century western society is one way to seriously combat these issues. I want to continue to grow older knowing that social perceptions are changing, and that I can feel comfortable in my own skin, with my own differences and my own talents and skills to bring to the table. The disabled minority is the biggest minority group globally, and yet we seem to fall so far behind in supporting this group. In a world where more people are exceeding life expectancy and where medical advances greatly improve our quality of life, we need to act now and shape a society where disabled people are unafraid to speak out. And I truly believe social media has a big part to play in all of this.

Social media changed my life. It might just change yours for the better, too.

PS: I have just started publishing posts on My Trending Stories found here, so why not check it out? Don’t worry, I’ll still be posting here, too. Hope you’re having a great day,
Heather x

Sources:

http://www.butyoudontlooksick.com/ (2016)

https://newsroom.fb.com/company-info/ (2016)

https://about.twitter.com/company (2016)

April Favourites (part 1) *

Hello! Just thought I’d write up a cheery post about things I loved using last month. These are a mixture of skin care, beauty and products to improve my quality of life, so there should be a little bit of something for everyone! I was fortunate enough to have received some of these products for review, and as always, I’ll indicate this with an *. I am only ever 100% honest when it comes to reviewing products, and I only ever share my thoughts and opinions with you if I truly, truly mean them. Honesty is the best policy.

There’s a second instalment to come, so keep your eyes peeled!

  1. Greenfrog Botanic Botanical Bodywash*

IMG_-qnfzu0

I was lucky enough to win these at a recent meet in Leeds, and they are seriously wonderful. Greenfrog Botanic create gorgeously indulgent products that are cruelty-free, vegan, and full of organic products. They ‘live by the four Es: Excellent quality soaps, Environmental and natural products that conserve our planet, Ethically 100% vegan to protect our animals and Exclusive’. Greenfrog’s founders Nick and Julie use Himalayan soap berries in their bodywashes, which have been used for centuries, and are extremely passionate about environmental issues so have done all they can to ensure their products are natural and as environmentally-friendly as possible. I was extremely impressed with these, and particularly loved the Geranium and Peppermint scent. My boyfriend even commented on how soft and less-irritated his skin was after using this, and he never usually takes any notice of anything remotely skincare-related! A definite seal of approval there. I can’t wait to get my hands on more of this.

2. Bee Good Lipbalm*

IMAG1737.jpg

I received this at the Leeds meet, and it has become a daily staple! I cycle into uni whenever possible, so this is great for keeping my lips moisturised. It is partly made by British bees, and the scent is just delicious! It reminds me of those drumstick lollies I used to eat when I was a child, and I find myself smiling when I use it. It is colour-free and leaves a glossy sheen.

3. Tangle Therapy

IMAG1085

 

I bought this to help with my motor skills in my hemi hand (the side affected by cerebral palsy). It is a loop of rubber-coated plastic joints, that can be manipulated and moved with one hand. Not only is it great for working on movement if limited, it’s also really relaxing and ideal if you need something to fiddle with. I also have a Tangle jr. original, which is slightly smaller and not rubberised. Because I have severe anxiety I sometimes find I need something to mess around with in order to focus my attention, or diffuse the anxiety. I keep it in my pocket as the Tangle jr. is discrete enough to take out and about. I love Tangle Therapy one, but it is slightly larger so I tend to keep it at home. As I say, it’s great for working on my right hand. I have also included a picture of the Tangle jr. below, which easily fits into a hand. The Tangle Therapy is chunkier in comparison. The Tangle jr. is really cheap on amazon, and a great thing to try out for the price, whether you’re just wanting a fiddle toy or something to exercise your hand with. They come in all sorts of colours and with all sorts of textures. I think you can also get a smaller Tangle Therapy, but I haven’t tried one yet. I might do!

IMG_dl0nmx_1

4. Loreal Keratin Treatment* (shampoo and hair mask)

IMAG1169

IMAG1170

I was kindly gifted this little set by Hays Salon, Hull, and I’m really impressed with it! It smells great, and the mask is luscious and incredibly moisturising which is great for my hair. Hays Salon is really friendly and they always do a great job, and I highly recommend it if you’re near Hull.

5. Viridian Ultimate Beauty Organic Skin Repair Oil*

IMG_-5lgj45

I received this in the Leeds’ Meet goodie bag and it’s absolutely fabulous! I already use Viridian’s Organic Ultimate Beauty Face Balm, and this of the same quality and luxury. I used to have terrible acne, so this product is great for softening the scarring. Smells great, too!

6. Kiko Campus Idol Brush*

IMG-20160312-WA0017

I was lucky to receive this at our Hull March Meet, and I’ve been using it ever since! Not only is the face brush brilliant, but it adds a gorgeous pop of colour to my dressing-table. Stunning! There’s no fall-out yet, and it’s lovely and fluffy for picking up product.

I was going to include a colossal 12 items in this one post, but I’ll spilt it up and you’ll get to see the second half later on this week.

What do you think of the products above? Are you keen to try anything?

Have a great week; I’m aiming to get as much dissertation work done as possible…wish me luck!

Heather x

 

 

 

 

Mental health, mentors and meds

Hello! I hope you’re doing okay. I thought I’d give you a little mental health update, which will be really useful for me to refer back to.

Things are starting to feel a bit better this end, and I’m hoping I’ll see even more progress. I’m crying a lot less – which is a great start – and I’m not as anxious when things don’t quite go to plan. I’m trying to handle things more calmly and think things through rationally, and this has been almost impossible at times, so things are definitely becoming more manageable.

I thought I’d had a blip, and at my last doctor’s appointment we discussed possibly upping my meds, but I’m getting back on track and powering through. I recently started seeing a mentor at university to keep my on track of work. One of my problems is I have very little faith in my work and abilities, so having someone to check in with every week is extremely helpful. It’s great to talk to someone who is completely impartial and she’s really kind and supportive.

I’m also heading back for another lot of counselling next week. I haven’t had a course of counselling for about nine months now, and I used to find it really useful. To make things more enjoyable I made the day all about me; I’d head into town, get some lunch, and sit in the sunshine whilst I waited for my appointment. I’m looking at these new sessions in the same way: they’re for me, and I’m going to get the most out of them. I’m hoping for good things.

I think I’m struggling with accepting the uncertainty of what’s to come, and that’s perhaps why I’ve been having really anxious days. I really like to know where I’m headed, and where I’m going in life, and at the minute I’m in an odd place where I need to look forward, but concentrate on the present. I suppose I need to learn that things will happen, but they’ll happen at their own pace. I’m in the middle of degree applications, job hunting and exploring all my options, and it’s all a little bit scary. I’m worried about coping with pain/fatigue, but I’m so desperate to prove myself.

I know I’ll work something out, but it’s hard not to worry about these things.

I know this is a really rambling post, but I’ll keep you updated on my counselling. Wish me luck!

Hope you’re having a great evening,
Heather x

image
Smudge the guinea pig

O

Ps hello from Smudge; she’s been keeping me company.